Participating in a Breast Cancer Clinical Trial

You’ve probably seen the notice on the bulletin board, while idly surveying the waiting room during your regular oncologist visit. “Are you a postmenopausal woman with ER-receptive early stage breast cancer?” Or the message might be more succinct: “Clinical Trial.” These recruitment posters are seeking volunteers willing to be the human guinea pigs on which new drugs (or new methods of treatment) are tested.

Why would YOU want to be a human guinea pig? Why not let someone else take the chance? Well, there are many reasons for participating in a clinical trial, and they’re as varied as the patients who choose whether or not to jump in. Here are some of the reasons you’d consider a clinical trial:

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You want to help find a cure for cancer. Most of you reading this aren’t cancer researchers. How else, other than donating money to cancer organizations, can you help advance the science? By putting yourself on the line, literally. By taking the chance, however minuscule, that the drug or therapy being tested on you won’t work as well as the tried-and-true treatment. By potentially sacrificing your own health–even your own survival. The desire to help others burns so fiercely in some of us that we take these unknown risks.

The new treatment being tested might actually be superior to current treatments. It might shrink your tumor, eliminate that nasty side effect, or save you from surgery. Doctor can’t know how effective new treatments will be till they try them… again and again and again. On willing human volunteers.

You’ve been told you’re terminal. Now what? Prayer? Alternative therapies? Many patients who’ve been given the ultimate crushing diagnosis–death–choose not to accept it, instead forging a new path that might lead them back to life. And many of those choose to participate in a clinical trial, usually a Phase I trial–which is the first testing step, and usually the most dangerous/least successful. But, when you’re terminal, and you truly have nothing left to lose, clinical trials are attractive for both of the reasons listed above.

On the flip side, and in the interest of making an informed decision, why would you NOT participate in a clinical trial?

If you’re in the group getting the new treatment, it may very well not work as well as the current treatment. You may be quite literally risking your life (see “you want to help find a cure for cancer,” above). In addition, the new treatment might come with some very debilitating side effects. No one knows; you’ll find out.

You can’t choose which testing group you’ll be in. If you’re participating in a trial because you really WANT to try out that new drug, there’s a 50/50 chance you won’t receive the new drug. So you will have gone through the trial and be no better off than if you’d just pursued the current recommended treatment.

Health insurance doesn’t always pay the cost of clinical trial treatments. If you’re considering participation, ask for help from your doctor, nurse, or hospital social worker to determine what your health insurance will (or won’t) cover.

While 60% to 70% of children with cancer participate in clinical trials with the approval of their parents, only 3% to 4% of adult cancer patients participate in trials. Want to make a difference in the fight against cancer? Look into joining a clinical trial.

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According to the National Institutes of Health's Web site, there are currently nearly 24,000 clinical trials in progress. About half are funded and run by universities and other organizations, such as foundations (e.g., the Bill and Melinda Gates Foundation, which is supporting 11 trials). About 25% are government-sponsored, and 25% are developed, supported, and run by industry, mainly pharmaceutical companies. There are 937 clinical trials currently recruiting breast cancer patients. What's the best way to find out about any of these trials–the purpose of the trial, your eligibility, and whether you can join? At the NIH's clinical trials Web site.

After considering the pros and cons, and deciding a clinical trial is right for you, ask your oncologist if there’s anything you can try. If you want to go armed with information, the American Cancer Society has a place on their Web site where you can match your diagnosis to current trials. Check out their clinical trials matching service.